I’ve read all your posts. I would like a bone scan but was told it wasn’t necessary. However since then, having finished chemo and rads, I am having really bad joint pains, every joint, in fact my whole body seems to ache, it’s worse at night and I have to take strong (prescribed) painkillers just to get out of bed in the morning! I know that joint pain can be caused by the chemo drugs (I was on Tax) but I thought that was during chemo, not weeks afterwards. I am at the hospital tomorrow about the joints and will ask for a bone scan, don’t know what to do if they refuse. Any advice?
Are you having any hormone treatment like Tamoxifen, Letrozole or Armidex? There are reports of joint pain when taking these drugs, so that may be the cause of your joint pains. Don’t be afraid to mention any pains to your oncologist - they’re not mind-readers! I hope you get some satisfactory answers.
I finally got my results today and the scan was clear!!! Just showed some degenerative changes in my neck which may be due to having injured my neck through lifting patients in my nursing days in my 20s. I have a physio appt next week so hopefully this will sort out the aching and clicking bones. Hope those of you who are also waiting for results get good news too.
Janet (soapsuds)
So pleased to hear your news Janet. Hope the physio will give you some relief from the pain but I bet it will never seem as bad now you know it isn’t the worst.
Dae, I doubt you’d be aching all over your body if it was bone mets; that’s just not how it happens. It most definitely sounds like a SE from the chemo or one of the hormone drugs, which is very common. I’d still mention it to your doctor though, as they might be able to prescribe something to help.
What you said about aching all over not being bone mets is exactly what I was told at the hospital this afternoon. I’m not on hormone therapy (am triple negative) but it is most likely the chemo that has caused it. I’ve to monitor it and see how it goes and see the consultant end of March. So I can stop worrying for a while! Relief is a great feeling, you must be feeling a great sense of it Janet!
I have not posted for ages and in fact the last time I posted was when I thought I had BC and was waiting for the appointemnt at the One Stop Shop. I scared myself looking on this site and others and vowed never to come on one again!
Well I was diagnosed in June 2007 and it resulted in a Wide Local Excision, Lymph Nodes removed, Chemo, Radio and 18 sessions of Herception as I am HER2 positive. Treatment finished in Feb 2009.
Here I am to eat humble pie and ask for your support. I am now waiting to hear when a bone scan appointment is arranged for me.
So I am into being so scared and thinking this is the end as I am HER2 positive being the more aggressive form so I am told.
Making my husband’s life hell and finding it is hard to talk to my 87 year old Mum as though I have nothing on my mind. She loves telling me about who has died, etc. Bless her she is lovely and I don’t want to worry her as well as myself.
I have an existing back problem and was told in 2006 that I was Osteopenic and should have another test around now.
I also have wear and tear of the spine, scolisis, etc. So I know back pain but this year having both retired we have worked physically hard on our cottage. It has helped me focus and not be thinking BC all the time.
Well I went for my check up last Thursday. When asked how I was I said OK but ‘real’ backache and like sciatica been working so hard. Thinking I was going to get a pat of the back!
You guessed it … He said 'God forbid it isn’t Bone Cancer but this will have to be investigated, etc. I said perhaps I have Osteoporosis now and he just said 'that doesn’t cause pain in itself!
That has really stopped me dead in my tracks. Scared stiff and thinking it can’t be it has to be all this hard work - but - the voice in my head is saying ‘yes’ it can you never guessed you had BC because you felt so well.
So you lovely ladies how do you keep yourself sane? Everything aches now and my back ache feels even worse and it has also travelled into my thumb!!!
I am sorry to hear you have all the anxiety of waiting for the bone scan. I can understand how your mind wants to tell you it must be related to your bone problems but how wise you are to check this out. Maybe it will be related to those problems - if a vertebrae is compressed it could be causing sciatic like pains. But then again you know you have had bc and can’t afford to be complacent. If it is any help my bc is HER2+++ (although that wasn’t known at my first dx in 1990. It was only discovered when I got dx with 2ndaries in 2002 - I had extensive bone mets that had spread to skull, ribs, collarbone, all of spine, hips & pelvis. And I knew nothing about this until I got sciatica one day!! Since that dx I have had 6 years virtually pain free. My treatment has been bisphosphonate and herceptin. It is only the past 18 mths that pain has become a problem so I am in the process of having some radiotherapy to the lower spine as I have a tumour growing alongside it. If the bone scan shows you have got secondaries in your spine they will probably offer you bisphosphonates - this is the norm. Keeping everything crossed for you that the pain is ‘only’ due to deterioration of problems you already have. Bet there was a time when you would have dreaded hearing that but it is amazing what we will settle for that isn’t bc.
Hi Gilly, I am glad that you have come onto the site again. I am sorry that it scared you last time. I, like Dawn, have bone mets and was diagnosed with that in 1999. I am still keeping well and thanks to the medication have been free from pain for quite some time now. When I was first diagnosed I was scared too, but I have gone on to enjoy life again. I too am on biphosphonates which help to strengthen the bones…but I take them by tablet form now, every day. Perhaps you don not have bone mets but you are doing the right thing by getting your bone scan done. If we can help in any way just ask.
Dawn, lovely to see you posting again. I haven’t been on all the forums recently. If you have time could you PM me to let me know how things are going? LOve to you all, Val
Thank you so much for your kind words and support. It is all just a nightmare isn’t it and ‘yes’ I agree it is amazing that we welcome ‘normal’ deterioration given to us as the reason for the aches and pains.
By the way does dx stand for diagnosis?
All I know is they say do not get stressed, eat correctly, etc. I even get to the stage when I say it didn’t help Linda McCartney did it and get out my fish finger and mayonnaise roll.
I actually went to a Cancer Retreat for a week that promoted healthy eating which I feel I have always anyway but just cannot afford organic all the time. It was intense and they were all very kind.
Anyway I met a lady who had C return and she said she had been there before and maybe it has returned, because she started to eat bacon butties that were her favourite and had stopped sticking to the recommended diet. Why do we do this to oursleves?
Anyway just so fed up with the numbed feeling of suspense and fear but hopefully as time goes on the adjustment will take place again.
Had the results of my bone scan but they are inconclusive. I was shown the scan and it looked like some sort of ‘star burst’ of white against the rest of spine. Oncologist said it could be any number of things - not necessarily cancer, so I’m to have an MRI soon. Don’t you just hate waiting…?
Oh Alex what a pain!! Yes the waiting is dreadful. I do hope the ‘inconclusive’ is a good sign and that the MRI shows nothing cancer related.
Gilly sorry about the abbreviations - I try to be careful not to use too many but that one slipped thru’ and yes you guessed right it is abbrev. for diagnosis. I am afraid I have no time for the ‘eat correctly etc’ brigade. I was told initially my dx was unlikely to be cancer because I had done this that and the other all like age I had kids, breast feeding, diet, non-smoking, non-drinking, good weight etc. and I end up with one of the more aggressive types of breast cancer! I get on with my life as I want to live and every now and then cancer interrupts it and I have to make adjustments. That is how life is for me. But I certainly am not going to beat myself up about any of it. I think I can honestly say I am happy with my life. Of course I would have preferred not to have had cancer as part of it but I am not going to let it ruin what I have.
Val it’s nice to be in contact with you again and I have pm’d you
